Living Donor
Liver Transplant
at Mount Sinai
Medical Center
What Every Living Donor Needs to Know!
The Center for Living Donations • One Gustave Levy Place • Box 1104 • New York, NY • 10029 • 212-659-8351
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About The Recanati /Miller Transplant Institute (RMTI)
Mount Sinai Medical Center is known internationally for its
innovation in research, education and clinical care.
The RMTI
at Mount Sinai Medical Center is one of the nation’s leading
academic liver transplant centers providing comprehensive care
to those with end stage organ failure.
Our liver transplant program began in 1988 when the founders, Dr
Charles Miller and Myron Schwartz performed the first liver
transplant in New York State.
In 1993, we performed the first
pediatric live donor transplant in the state and in 1998 the
first adult to adult living donor liver transplant.
Calling on our many years of experience, we continue to provide
lifelong partnerships with our patients, their families and
referring physicians. Our mission is to provide exemplary
medical and surgical care in a compassionate and individualized
setting, a hallmark of the RMTI.
In 2010, The RMTI created The Center for Living Donation.
The
focus is solely to provide quality care to living organ donors
pre and post donation in a patient friendly environment.
This
innovative center is the first of its kind providing expertise
in the medical, surgical and psychological health to people
considering living donation and to those who have donated the
gift of life.
Our Mission:
To provide quality health care to potential and actual live
organ donors in an environment focused on wellness through the
latest medical advances, comprehensive evaluation, support and
education, before, during and after donation.
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Donating part of your liver to a person close to you can be a priceless gift, but it
must not be undertaken without serious thought. We recommend you begin the evaluation with an
open mind and listen carefully to all the members of the living donor team, read this guidebook and
research live donation carefully. Discuss being a living donor with people close to you as well. This is a
completely voluntary procedure and at no point should you feel coerced or obligated to undergo
surgery.
Living donation will not provide any benefit to you except the knowledge that you have tried to
save a life. Occasionally the evaluation process may uncover an illness that you may not have known
about. The benefit to the recipient is that he or she can be transplanted in a controlled situation prior to
the development of acute life threatening complications and further progression of the liver disease.
The outcome of the living donor liver transplant is not guaranteed. Its benefit is the timing of the
operation, which is likely sooner than waiting for a deceased donor.
Living Donor Team
The living donor team that will perform a comprehensive evaluation is called the IDAT (Independent
Donor Advocate Team)
The living donor team is comprised of many people who will evaluate and educate you about the
process.
They include:
·
·
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·
·
·
·
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·
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Donor surgeon
Hepatologist
Registered Nurse or Nurse Practitioner
Psychiatrist
Social Worker
Financial Coordinator
Ethicist who serves as independent donor advocate
Internist who is the independent donor advocate
Patient Care Director of Nursing on 9 Center
Live Donor Program Administrative Assistants
Many members of the IDAT team are part of the RMTI transplant institute but do not care for
transplant recipients. Some members such as the Internist and Ethicist work for the hospital. None
receive financial gain from participating in the IDAT.
At times you may feel overwhelmed with the information you are receiving from the team
members, or you may get tired of repeating your story multiple times but each member plays a
critical role in the evaluation process and has important information for you to consider prior to
making your decision about donation.
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How to Start the Process:
1.
2.
Telephone screening is performed by a member of the IDAT and a “Potential Living
Donor Health Questionnaire” is completed and reviewed by the transplant coordinator
Potential Donors are encouraged to attend educational class on live liver donation
3.
Donor criteria for living liver donation includes:
a. Compatible blood type or compatible paired exchange
b. Close emotional relationship with the recipient
c. 21 to 60 years old ( those 18-20 and emancipated minors are considered on a
case by case basis for left lateral segment donation)
d. Non smoker
e. BMI < 35
f. Absence of chronic illness that could be affected by partial hepatectomy
g. Absence of liver disease
h. Absence of infectious disease
i. Absence of severe active psychiatric disorders
j. Absence of current or recent history of alcohol or substance abuse
k. No evidence of coercion or payment
l. Must be willing to accept non-autologous blood transfusions
4. An interested potential living donor without obvious contraindications to donation will sign
consent to begin evaluation and be scheduled for a comprehensive donor evaluation by
the IDAT team.
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The Donor Evaluation:
The comprehensive donor evaluation will be arranged for you and typically occurs over two
days. The Evaluation consists of:
1)Living Donor Coordinator meeting to discuss process of evaluation, and educate donor
about risks and benefits of donation
2)The Donor blood type and screen is performed at the transplant center and repeated
once at the time of consent for surgery
3)Comprehensive laboratory testing to assess health, rule out any new medical illnesses
including unknown liver disease, identify any infections at risk for transmission to
the recipient and any evidence of cancers
4)Consultation with Independent Donor Internist to perform history and
physical exam to assess health of donor and determine evidence of increased risk of
surgery
5)Consult with the Donor Advocate Social Worker to assess relationship to recipient, social
support, motivation and understanding of the donation process among other
aspects.
6)Meeting with a Transplant Financial Coordinator to review financial implications of
donation and complete the financial agreement
7)Chest x-ray will be performed to take a picture of your heart and lungs carefully
8)MRI of the abdomen or Cat scan angiogram to assess liver parenchyma, arterial and
venous anatomy, liver volumes and biliary anatomy
9)Consultation with a hepatologist who is not the primary hepatologist of the recipient to
evaluate you for intrinsic liver disease or increased future risk of liver problems
10)Consultation with the Donor Surgeon to assess surgical risks to donation and assess
anatomical feasibility of surgery and educates you regarding donation and recovery
11)Consultation with the Psychiatrist to assess you for evidence of coercion, ability to make
informed consent and presence of psychiatric conditions that would prohibit
donation
12) Cardiac evaluation to include
1)
ECG
2)
Echocardiogram
3)
Stress test if you are over 50 or have any risks for cardiac disease
4)
You may also need to see the cardiologist if needed
13) Meeting with the Hospital Ethicist who serves as an independent donor advocate to
ensure that you are informed of risks and options
14)Meeting with Nursing leadership on 9 center and tour of inpatient unit
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Additional Tests as Indicated:
Additional tests may be required depending on your medical history these may include:
Liver biopsy
Colonoscopy
Pulmonary Function tests
Consultations with specialists
Depending on your age you will need cancer screening based on Cancer Screening Protocols as
per American Cancer Society Guidelines based on age and sex (many can be done locally)
Being Informed To Make the Right Decision for YOU
You will be asked to give consent on multiple occasions. The first time is when you begin the evaluation
and finally when you ultimately decide to undergo surgery. It is the role of the donor team to make sure
that all potential donors are fully informed of the risks involved and given ample time to make the right
decision for themselves. Listen carefully to the donor team and their description of the surgery, recovery
and risks involved. Take the opportunity to attend the educational workshops available and speak with
someone who has gone through the process. Knowledge is power and will help you regardless of your
decision.
All donors must be:
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Competent
Willing to donate
Free of coercion
Medically and psychosocially stable
Fully informed of the risks, benefits and alternatives to living donation
To ensure that you completely understand the process and risk, the transplant center will present its
experience and program statistics so that you can make an informed choice about donation at this
center.
Payment for Organs is Illegal
The sale or purchase of human organs is a federal crime and it is unlawful for any person to knowingly
acquire, receive or otherwise transfer any human organ for valuable consideration for use in human
transplantation.
Additionally, if any money was given or will be given in exchange for an organ, that person may be
subject to criminal prosecution; any insurance coverage may no longer apply and the donor will become
personally responsible for all the health care costs associated with the donation, and that persons
private health information will be available to law enforcement agencies.
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The Donor Operation
Liver donor operations differ depending on whether you are donating to a child or an adult.
Donation to a child involves removal of a portion of the smaller left lobe of the liver, while donation to
an adult requires removal of the full left lobe or a portion of the larger right lobe. See Figure.
Figure
Left lateral segment hepatectomy
The shaded area will be removed
Left hepatectomy
The shaded area will be removed
Right hepatectomy
The shaded area will be removed
Surgery to remove a piece of your liver requires general anesthesia and a large abdominal
incision to safely remove the liver. This surgery is called a partial hepatectomy or liver
resection. If you are donating to a small child the surgeon will remove approximately 20% of
your liver and perform the “left lateral hepatectomy”. If you are donating to a teenager or
small adult you may be able to donate 40% of your liver and the surgeon would perform a “left
hepatectomy”. The most common procedure in adult to adult liver donation is the removal of
60% of the liver or a “right hepatectomy.” The donor evaluation and abdominal imaging will
help the Team determine which part of your liver to remove.
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The larger the piece of liver removed, the more strenuous the surgery and the longer it takes
you to recover. Additionally the risk to you is slightly higher as more liver is removed.
During the surgery, first the liver is exposed, then the proper blood vessels and bile ducts are
located, cut, and tied off. Then a segment of liver is dissected out, the cut surfaces are
cauterized, and it is removed for transplantation.
In donations to adults, the gallbladder is also removed due to its close connection to the right
lobe of the liver. The donated segment is drained of blood and put on ice to be carried to the
operating room where the recipient is with his or her surgical team.
The surgery takes approximately 4-6 hours and you will be closed with internal sutures and
externally with steri strips, tape, or glue. In rare instances staples will be required.
The Scar
The incision varies depending on the size of your abdomen and the lobe removed. The larger
the part of the liver donated the larger the scar. Our surgical team will try their best to keep
the size to a minimum but it is important to know that liver donation requires an abdominal
incision and permanent scar. The right lobe donor will have a midline (vertical) and may have a
sideways scar as well. (See figure below) The left lobe donors and the left lateral hepatectomy
will have a midline incision but may be shorter in length. In rare instances a patient’s scar may
heal with thickened scar tissue called keloids. (see photo) It is important to follow your Team’s
instructions post donation so that you can care for your incision to promote healing and
minimize the appearance of the scar. This includes following activity and lifting restrictions to
avoid hernia.
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The Recovery
A donor is typically hospitalized for 5-7 days after the hepatectomy and is unable to
return to work for 4-6 weeks. The first day after surgery you will be very sore, nauseated, and
slightly groggy. On days 2-3 you will have still have severe pain and some nausea as you are
switched from IV to oral pain medication and encouraged to walk a little. You should take the
medication at least twice a day. Now is not the time to be tough, you need this medication.
By day 4 you start to feel yourself again. You are allowed to eat clear liquids and your
bowel function will start to return. After you have a bowel movement, are eating regular food,
and have the drainage tube removed from your abdomen, you may be discharged from the
hospital. Following discharge, you will be given a prescription for oral pain medicine to take as
needed, and you can expect to be moderately fatigued for several weeks.
You must not lift greater that 15 lbs. for 4 weeks and you must avoid heavy lifting for 12
weeks (>30lbs). Otherwise, you are encouraged to slowly resume normal activity at your own
pace, making sure that you walk daily and stay active. Donors are strongly encouraged to avoid
alcohol and any medications or herbal remedies that can be toxic to the liver for six months.
Women should avoid pregnancy for one year.
Once you return home, if you develop a fever or have drainage from your incision you
should call the transplant office and speak to your nurse of doctor. You should shower daily,
wash your incision with soap and water, and pat dry. Once dry, apply Neosporin ointment to
the incision. You should eat a normal, healthy, well-rounded diet to improve healing.
Typical recovery as reported by liver donors: It
can take up to 19 months to feel yourself again
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20
15
10
6.6
5
weeks out of
work
weeks to feel
yourself
0
weeks out of weeks to
work
feel yourself
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The transplant center will follow you closely as you recuperate. You will be seen one
week after discharge to assess your condition and check your blood tests. You will be seen
regularly during the first year to make sure you are recovering as expected. Most donors will
be out of work for about 6 weeks but not feel 100% normal for up to 4-6 months.
At one year and annually for 5 years we ask that you return to see us for a checkup.
UNOS (The United Network for Organ Sharing)required that we follow you for two years and
New York State requires us to follow you for five years and the transplant team strongly
encourages you to comply with follow up recommendations. If you feel ill and need additional
follow up, you are encouraged to call the center.
It is also important for you to keep your family doctor abreast of your progress and see
him or her annually for a check up as well. You should provide the donor team the information
about your primary care physician so that we may send your reports to your doctor so he or she
is fully informed of your care.
Risk of Live Liver donation
The donor surgery is called a partial hepatectomy, meaning “the surgical removal of a part of
the liver.” Partial hepatectomy can be done safely, and partial hepatectomy in a well person
carries less risk than when it is done to treat someone who is sick with liver disease. But it is still
major surgery, and there are still risks involved, even the risk of death.
With any major abdominal surgery, chronic pain, internal bleeding, infection of the wound or
other organs of the body, and injury to other areas in the abdomen, as well as death, are
potential risks. Other risks include postoperative fevers, pneumonia, and urinary tract
infection.
Patients who have major surgery are also at risk to form blood clots in their legs. These blood
clots can break free and travel to the lungs where they cut off the blood supply to a portion of
the lungs. This is called pulmonary embolism. Blood clots in the legs occur in about 2% of all
major surgeries; 2% of these blood clots will break off and cause pulmonary embolism. We try
to prevent blood clots with inflatable sleeves that fit over your calves to keep blood flowing in
the legs during surgery. When they do occur, blood clots and/or pulmonary embolism are
treated with blood thinners that you need to take for several months and require you to have
frequent blood tests. However, a large pulmonary embolism can be fatal.
Major abdominal surgery carries a risk of later bowel obstruction and/or pain due to adhesions.
Adhesions are somewhat like scars in the abdominal cavity, which can form tight bands or make
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areas of intestines stick together and get twisted. Obstruction due to adhesions occurs in 5% of
major abdominal surgeries and can occur years after the surgery. Sometimes adhesions can
cause strangulation of the intestines and life-threatening gangrene. Obstruction from adhesions
sometimes fixes itself, but often requires another surgery.
There are also risks that are specific only to this surgery. For the living liver donation, 25-60% of
the liver will be removed. Removal of a portion of the liver may cause the remaining liver to
not work as well for a short period of time, but it soon begins to recover and will begin to grow
back within a few weeks. However, in rare cases, liver failure can result and may require the
donor to have a liver transplant. This is a very rare event (about 2 transplants per 1000 living
liver donor surgeries). If you are donating to an adult and having your right lobe removed, your
gallbladder will also be removed during this surgery. The gallbladder is not needed for normal
function. Some people who have their gallbladder removed have periods of diarrhea, cramping
and intolerance to fatty foods, which may last for several months.
The most common liver complication after surgery is a bile leak. Bile is normally produced by
the liver and flows through ducts into the gallbladder where it is stored until needed to help
digest a meal. A bile leak occurs when one or more ducts from the liver have not closed
entirely after surgery. Bile is irritating to the inside lining of the abdomen and can cause
inflammation and scarring. Most bile leaks heal themselves, but occasionally a leak may
require another tube to be placed through the skin and into the liver to drain bile into a bag
while the liver heals. In rare cases, surgery is required to close the leak. The rate of bile leaks
happening across the country ranges from 5-10%
A long-term complication that can occur is a biliary stricture that is a narrowing of the
remaining large ducts that carry bile from the liver to the intestines. Early data shows that such
strictures will be rare. They can usually be fixed without surgery by dilating the stricture with a
stent (plastic tube) via an endoscopic procedure (through the mouth) or a percutaneous
procedure (through the skin).
There are rare complications that can occur involving the blood supply to the liver, both in the
arteries and veins. These include strictures and blood clots in these vessels that may occur long
after surgery. The MRA or CAT scan that you have before surgery will help the donor surgeon
to gauge how risky the surgery might be in this regard.
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Another rare complication is injury to the spleen during surgery. The spleen makes white blood
cells that help to fight certain types of infections. If the spleen is injured during surgery, it must
be removed. People live normal lives without a spleen, but they are more susceptible to
certain types of infections, most of which can be prevented with the proper additional
vaccinations.
The most common late complication is the formation of incisional hernias. A hernia forms
when the skin has healed, but the underlying muscles and connective tissue have not knit
together well. This creates a bulge or “bubble” under the skin when standing. While this can
be unsightly, more importantly it has the potential to trap a loop of intestine and strangulate it,
which can cause gangrene. For this reason we often recommend surgery to correct hernias
when they occur; in some cases, more than one surgery has been necessary. Hernias can occur
in 5-7% of donors. If you are overweight, you may be more likely to get a hernia. We believe
that some hernias may be prevented by avoiding activities that put pressure on the abdomen,
such as heavy lifting or straining at stool.
Nationwide, the risk of having some type of problem, minor or major, from this surgery is 1530%. These include infection, hernias and swelling (about 2 in 7 cases). At this center, 22% of
donors have had problems after surgery. Most problems are minor and get better on their
own. Rarely do they require another surgery or procedure. However, living liver donor
transplants are still fairly new so there may be other risks that are not yet known.
So far in the United States, the mortality rate (death) has been about 0.2% or 2 deaths in about
1000 donors.
General Anesthesia
This surgery will be done under general anesthesia with a spinal for pain management. There
are a number of known possible risks with any surgery done under general anesthesia. An
anesthesiologist will explain these to you and you will need to sign a separate consent for
anesthesia.
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Blood Transfusions
You may need blood transfusions during this surgery, although this is uncommon. It may be
possible to bank your own blood before the surgery. Please note that if you do need a
transfusion, you may need more blood than you have banked. Our team can help you do this if
you are interested.
Post-Surgical Course/Discomforts
Drains will be placed in your body to help you heal, to be removed before you are discharged
from the hospital. There is a chance that you could be placed on a machine to help you breath
after surgery. You will feel pain at times severe (for example: gas pains, sore throat, soreness,
backaches, etc.) after the surgery. You will be offered pain medication in the form of
intravenous medication and pills. You are encouraged to take these medications when offered
to relieve the pain.
The Pain Service at Mount Sinai Medical Center assists the transplant surgeon in managing the
pain relief for each donor.
Most pain medicines make you drowsy and can affect your breathing and bowel function. We
will try to get the right balance of pain medication to make you comfortable but not drowsy, so
you can do your deep breathing exercises, coughing, and walking. We use an epidural catheter
inserted before surgery to administer pain medication after the surgery. The anesthesiologist
will discuss this with you on the morning of the surgery.
The use of the patient controlled anesthesia (PCA) provides patients with an hourly rate of pain
medication as well as the patient “administering” extra doses as the Pain Management Service
has ordered. This medication may be administered intravenously or in the epidural catheter.
Due to “lock-outs” and expertise of the Pain Management Service, the donor is not able to
“overdose” themselves in pain medication. This method of pain management is discontinued
on about post operative day # 4 and donors are switched to oral pain medications in
anticipation of discharge. The transplant surgeons as well as the Pain Service physicians, will
assess your pain level.
You will get a prescription for pain medication to take at home before you leave the hospital.
Pain may last for a few weeks.
Regeneration: Success of living liver donation is partially due to the liver’s natural ability to
regenerate. Regeneration occurs rapidly in both the donor and the recipient. Even within the
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first seven days after surgery significant regeneration has occurred, and within six weeks the
liver sections in both the donor and recipient have grown to 80% of the size of a normal liver.
However, growth then slows down and eventually stops, so that at one year the liver is still
about 10% smaller than its original size. Liver function in the donor returns to normal levels
within four weeks, with complete normalization of blood liver function tests by 12 weeks postdonation.
Understanding Organ Allocation in the United States
Since all potential recipients of living donors are also listed with UNOS (The United Network for
Organ Sharing), if for some reason living donation does not go forward the recipient will be
eligible for a deceased donor. In addition if the recipients name comes up for an organ prior to
the living donor surgery, deceased donation would take precedence. Organ allocation is
maintained by UNOS, a non-profit charitable organization that operates the Organ Procurement
and Transplantation Network (OPTN) under federal contract. On an ongoing basis, the
OPTN/UNOS continuously evaluates new advances and research and adapts these into new
organ transplant policies to better serve patients awaiting transplants.
To learn more about Liver Organ allocation, read the brochure Questions and Answers for
Transplant candidates about MELD and PELD or go online to www.UNOS.org.
Preparing to be a Donor
Plan Ahead: Peace of mind during your hospital stay and recovery will be enhanced by planning
ahead. It is recommended that you consider making the following advanced directives and legal
arrangements:
Appoint a Health Care Proxy: Did you know that it is possible to carry out your wishes for
medical care even if you cannot answer for yourself? By choosing a person (s) to represent you
and to act on your behalf, you will always remain in control of your medical care. Transplant
Social Workers will educate you further on appointing a Health Care Proxy. We require you to
complete a Health Care Proxy a requirement for surgery to take place. Without a health care
proxy the medical team must turn to your next of kin. For instance, an unmarried adult’s next of
kin is his or her parent. A separated patient’s next of kin is the spouse.
Make a living will: A living will specifically says what procedures you want or do not want if you
are not able to make your own medical decisions.
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Appoint a Power of Attorney: Compelling business and legal matters often require patients’
attention during hospitalization and recovery. By choosing someone to conduct your affairs,
you can reduce stress on you and your family.
Create a Joint Bank Account: A family member who has joint access to your bank account will
be able to pay bills, deposit and withdraw funds.
Accommodations: Your family may be comforted by being able to stay nearby when you are
hospitalized. TLC: The Transplant Living Center may be available to provide affordable housing
away from home. There are also a variety of hotels nearby. A complete list of hotels can be
provided to you by your Transplant Social Worker
Speak to someone who has donated
No one knows what it is like to be a donor except someone who has done this before. It is
strongly encouraged that you speak to a prior donor so you can have first hand knowledge as to
what should be expected; what questions to ask and how to really prepare yourself for the
surgery. The Donor team can help you with this.
When you go Home
Discharge Planning: Transplant Social Workers will work with you and the Medical team to
coordinate a safe and appropriate discharge plan when you are well enough to leave the
hospital.
On the day of discharge from the hospital, you and your family will receive written instructions
on how to provide care for you at home including telephone numbers you can access 24 hours
a day to speak with a doctor on call. Typically, after a hospital stay of 5 to 7 days, you will not
require any special nursing care at home. You will be advised to eat a normal diet, to walk
around several times a day and to get plenty of rest. You will be unable to drive for 4 weeks
following discharge. You will be required to return to the Transplant Practice for a check-up
often within the first year and then annually.
PSYCHOSOCIAL IMPACT OF DONATION:
Many issues may affect donors and their families from the psychosocial standpoint and should
be addressed before a decision to donate is made. Your social worker will be available to
discuss and of your concerns.
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Since large abdominal scars from surgery are inevitable, potential donors are strongly advised
to evaluate whether scarring will negatively affect their body image and lifestyle. Some donors
worry about the possibility that the donated liver might be rejected by the recipient. If that
occurs, the recipient would be listed for an emergency donation from a deceased donor. In that
case, your donation would not be useful to the recipient or anyone else.
It is also important to consider how you might feel if the recipient died during or after the
surgery. Due to your emotional relationship with the recipient, are you able to accept that
possibility as a risk? You might have to manage not only your own recovery from major surgery;
but also deal with a grief reaction, not only yours, but that of the recipient’s family as well.
Another concern facing donors is that the disease that caused the recipient’s liver failure may
reoccur and infect the new liver. If the reason for the recipient’s liver failure is Hepatitis C, for
example, the recipient may have to deal with taking extra medications to combat the virus.
Additionally if your recipient has liver cancer this can reoccur in the new liver.
Preparing Your Family for Donation:
Ideally, family members will accompany you to liver transplant education seminars given
throughout the year. There they will become familiar with the members of the team who will
assist you throughout your medical journey.
In some families, donors may experience fierce objections to the idea of donation, often from a
significant other. It is helpful that family members who object to donation be given the
opportunity for the donor team to answer their questions and to discuss their objections. Your
social worker and psychiatrist often meet with family members individually.
Ask your family to create a separate team of caregivers for you, the donor, and the recipient.
As inpatients, both of you will find comfort in knowing that the other has caregivers devoted to
them alone. Make sure that family members know how important it is to help with your
transportation to and from the hospital when you are unable to drive.
Special focus on young children is advisable. Your social worker will provide you and your
children with help on age-appropriate explanations about your hospitalization. Pediatric
recipients and their siblings have access to the Child Life Program where specialists will prepare
children for surgery from a psychological point of view.
Other donors and caregivers who have completed surgery and recovery are always available to
provide you and your family with telephone or email support.
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Financial Considerations for Donation:
Medical expenses associated with donation are borne by the recipient’s health insurance
provider. Donors are responsible for out-of-pocket expenses that may include some of the
following: parking, transportation costs, telephone, television, possible living expenses after
discharge such as hotels, childcare, and medical expenses after the first year.
Due to surgery, donors are advised that health and life insurance companies may increase raise
their rates or even deny coverage. Donors are strongly advised to discuss donation with
insurance providers in advance of donation.
Although families are allowed assist donors with their out-of-pocket expenses, Federal law
prohibits receipt of money or other compensation for a donated organ.
Donors are strongly advised to discuss possible donation with your employer in order to
investigate benefits and to develop a financial plan for your hospitalization and recovery. Some
employers oppose voluntary medical leave and donors should be advised that they may face
not only a possible loss of employment; but also, donation may impact future employment,
especially where heavy lifting is required.
Disability Insurance:
In New York State there is short-term disability insurance for most full time workers that
provides modest replacement income while you are unable to work. New York State ShortTerm Disability Insurance (filed through the NYS Workers’ Compenstion Board) is accessed by
submission of forms filled out by you and your doctor. A way to obtain a pamphlet and form
and to see if you are eligible is to call 1-800-353-3092 or 718-802-6964. The human resources
department at your job may also have forms. Some employers have a private short-term
disability insurance policy that you can/should access instead of filing through the New York
State Workers’ Compensation. This would get coordinated by the employer’s human resource
department. This short-term policy usually asks for the same kind of information as the State.
Social Security Disability Income (SSDI) is administered through the Social Security
Administration for persons with a work history. Applicants apply and submit documentation of
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their disability. Note that there is a five-month waiting period. Therefore, we recommend that
you apply for Social Security Disability as soon as it seems that you will be unable to perform
any substantial gainful employment that exists in the national economy due to a physical or
emotional condition that has lasted or is expected to last a year or longer or result in death. It
is extremely important to understand that neither you nor your doctor makes the
determination of disability. The determination of disability is made based on the
documentation provided by your doctor, laboratory and radiological test results, and
sometimes a physical examination by doctors contracted by the State and Federal government.
ADVOCACY TIP: It is very important to include all medical conditions, signs and symptoms
and how each of these preclude an applicant from engaging in substantial gainful
employment as well as educational levels and prior types of employment. This is essential
because if any one condition is not sufficient to support a claim of permanent disability then
Social Security is mandated to consider all the conditions in the aggregate as well as the
applicant’s educational and language abilities in order to make a determination.
REMEMBER: your doctor’s opinion does not count. All that is considered is the documented
medical condition and the other factors (such as other contributory medical conditions,
education levels and language). Evaluation of your work record can be done by contacting your
local Social Security Office. Call 800-772-1213 to locate your nearest office and to make an
appointment to see a counselor to apply for benefits. Long-term disability from donation is a
rare event.
Another long-term benefit is Supplemental Security Income. It is granted to low-income
disabled or elderly persons without a work record or whose income from SSDI is not sufficient.
Thus, SSI supplements social security benefits. The definition of disability has the same rigorous
standard as for the Social Security Disability program discussed above. Applications are made
at your Social Security Office.
Family Medical Leave Act (FMLA): Federal legislation allows for workers in public or private
enterprises of at least 50 employees to be awarded 12 weeks per year of unpaid time off taken
all at once or day by day. The leave is granted due to an illness or disability of the employee or a
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family member. For example, once FMLA is granted, a family member would be eligible to assist
you during your hospitalization, recuperation and follow-up medical appointments. The
employer would be required to maintain health insurance benefits during the unpaid leave.
Use of the Internet:
While the Internet can be a valuable resource for medical information, donors are advised to
use the Internet with an awareness that sometimes the facts about donation may be
sensationalized and distorted. Please contact your donor team with any questions or concerns.
UNOS has developed and excellent website for those considering living donation and you are
encouraged to review it at www.UNOS.org. Additionally The American Society for Transplant
Surgeons has videos on live donation at www.ASTS.org and The New York Center for Liver
Transplantation can test your knowledge about live donation at http://www.nyclt.org.
Education and Support:
Please see addendum with for a list of educational and support groups you may wish to attend
to prepare for your transplant and to cope with your recovery afterwards.
RESOURCES:
American Liver Association: 1-800-223-0179 or website is www.liverfoundation.org
American Society of Transplant Surgeons at www.ASTS.org
Disability Claims: New York State 718-802-6964
LOLA or Latino Organization for Liver Awareness: 718-892-8697
National Kidney Foundation: www.kidney.org or 1-800-622-9010
New York Center for Liver Transplantation at www.nyclt.org
Tobacco Cessation Clinics: 212-939-6000
United Network of Organ Sharing: 1-888-894-6361, www.unos.org/patient
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Frequently Asked Questions:
Q. What are the advantages to living donor liver transplant?
A. The main advantage is that the patient does not have to wait for a liver to become
available from the United Network of Organ Sharing (UNOS) waiting list and risk dying
before one can be found, or face going into surgery in a much sicker, weakened state.
The sicker a patient gets, the greater the chances that there will be complications during
the early post-transplant period, including mortality, and the higher the risk of not doing
well after transplant.
There may be some additional benefits. The transplant can be scheduled for a time
that is medically best for the patient and—since living donors are usually young, healthy
adults who have undergone a thorough medical evaluation—the quality of the liver
itself may be better. Finally, preservation time (when the liver is without blood) is
minimal—minutes, not hours.
Q. What are the possible complications of the donor’s operation?
A. As with any surgery involving general anesthesia, there are possible complications
from the anesthesia itself, including heart problems, stroke, and blood clot formation in
the legs or lungs. There are also risks of bleeding or of bile leaks after surgery, and the
possibility that the remaining portion of the liver will fail and the donor will need an
urgent liver transplant. There is even a risk that the donor might die.
While such complications are rare, they do happen, and we will discuss them with
you in more detail during the evaluation. The most common complications of this
surgery are small bile leaks from the remaining portion of your liver, minor wound
infections, and gastrointestinal upsets (such as constipation, bloating
indigestion, occasional nausea or diarrhea). These usually resolve after a couple of
weeks, but may take several months.
Q. How much of the donor’s liver is removed?
A. The liver is divided into a right lobe and a left lobe. The division between the lobes
permits surgeons to divide the liver into two distinct parts, which can function
independently of each other. When the recipient is an adult, about 40-60% of the
donor’s liver is usually removed, depending on which lobe is used. Because of its
position on the underside of the liver, the donor’s gallbladder is also removed.
When the recipient is a small child, only a piece of the donor’s left lobe (called the
left lateral segment) is removed. This segment is approximately 25% of the liver. The gall
bladder remains intact.
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Q. How much time has to pass between removing the piece of liver from
the donor and transplanting it in the recipient?
A. Usually, the operations on the donor and the recipient take place at the same time.
If the recipient has a liver tumor, then the recipient will be brought to the operating
room first to determine if the cancer has spread outside the liver. If it has, the transplant
procedure is cancelled.
Q. Do I need to be related to the recipient?
A. No, you do not need to be a blood relation, but because there are risks involved, it is
recommended that you have a vital emotional relationship with the recipient. At the
current time, “Good Samaritan” (i.e., anonymous) donations are not allowed.
Q. If I am related to the recipient, will he or she have less rejection?
A. In reported studies, there does not appear to be a lower risk of rejection if the donor
is a blood relative. The relationship between donor and recipient also does not appear
to affect the amount of immunosuppressive medication the recipient will need. You
would probably need to be identical twins for the relationship between the donor and
recipient to make a big difference.
Q. What is involved in the evaluation process?
A. The purpose of the evaluation is to make sure that your liver is normal and of
adequate size, and that you do not have any medical or psychosocial issues that would
make this procedure more risky or difficult for you. We also want to make sure you do
not have a medical condition that could be transmitted to the recipient. Finally, we want
to make sure that you are becoming a donor voluntarily, and that no one is pressuring
you or paying you to do this.
Q. Will my recipient be removed from the UNOS transplant waiting list if
I am evaluated?
A. No changes will be made to the recipient’s status on the UNOS waiting list until after
the transplant.
Q. Will my evaluation be covered by medical insurance?
A. You should not incur any expenses related to the evaluation, surgery,
hospitalization, or immediate post-operative care. The majority of insurance carriers will
approve a Living Donor Evaluation once the recipient has been accepted as a candidate
for liver transplantation. Since most recipient insurance carriers will cover the donor’s
medical expenses only for a short period of time. You may, however, incur some
expenses for travel and for pain medication after the surgery. If you receive any medical
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bills related to the evaluation, surgery, hospitalization or immediate follow-up, you
should forward them to the Living Donor Coordinator at Mount Sinai.
Q. May I get my evaluation done by my own doctor?
A. Given the extent of the surgery and the experience of the Living Donor team, the
evaluation must be done at Mount Sinai Medical Center.
Q. What is the first step in the evaluation process?
A. The first step is to know your blood type. This is a simple test that your doctor can
do, or you can go to any blood donation center and they will check it for free. You must
be either the same blood type as your recipient, or blood type “O.” Your Rh factor—
positive or negative—does not affect your suitability to donate.
Q. What do I do once I know my blood type?
A. Call the Living Donor Coordinator office at 212-659-8351. You will be put in touch
with the Transplant Coordinator for the Living Donor Liver Transplant Program. A brief
health screening will be over the phone, and you will have a chance to ask questions.
We will also request detailed demographic data (date of birth, address, etc.) and
insurance information from you and schedule an appointment for you with our Living
Donor surgeon. A packet of information will then be sent to you.
Q: Do I need a liver biopsy?
A liver biopsy may be required in some cases.
Q. Do I need to fast before my appointments?
A. In general, it is not necessary to fast before an appointment, unless we specifically
tell you to do so.
Q. Should my family come with me to the appointments?
A. It is mandatory that your support person comes with you to the appointment. There
is a tremendous amount of information provided and it is important to have a “second
set of ears” listening. All these appointments offer the opportunity for you and your
family members to ask questions and learn more about the procedure, so you can make
an informed decision. The recipient may not attend these appointments with you. He or
she may accompany you to Mount Sinai but he or she would not be present at any of
the discussions or evaluations.
Q. How quickly will I know if I can be a donor?
A. Generally, within 2 weeks after you complete every component of the evaluation,
the Living Donor Team will contact you about the decision. If you meet all the criteria to
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become a donor, you will need to allow at least 2 weeks’ reflection time before we will
proceed with surgery. This is to give you time to think through your decision to donate
part of your liver. It is not a decision you should make lightly. You should consider it
very carefully and discuss it with your family.
Q. Who makes the final decision as to whether I can be a donor?
A. Once you have completed the evaluation, the Living Donor Team reviews all your
information and makes a recommendation to the Transplant Team at the Donor Review
Meeting, which brings together physicians, surgeons, transplant coordinators,
radiologists, and social workers. The Transplant Team as a whole makes the final
decision to proceed. In our decision-making, we put the well-being of the donor ahead
of anything else. Your safety is paramount.
Q. If I am cleared to be a donor, who decides when to do the transplant?
A. This decision is made jointly by the Transplant Team, by you, and by the recipient.
The Transplant Team, particularly the physicians involved directly in
your recipient’s care, will determine as accurately as possible the best time to do the
transplant, based on the recipient’s medical condition. Once we know this, we ask for
your input as to what suits you best, within clinical limits. Usually, Tuesdays are reserved
for living donor surgery, since we need to coordinate two operating rooms and two
teams of surgeons, nurses and anesthesiologists.
Q. Will the recipient be involved in the donor evaluation process?
A. No. The donor evaluation is kept confidential. As a potential donor, you will have
your own team of healthcare professionals, known as the “Donor Advocate Team.” The
Donor Advocate Team will be separate from the recipient’s team and will not provide
any information to the recipient or any of the recipient’s family members. As a potential
donor, it is your decision how much information you wish to share with the potential
recipient and his/her support.
Please remember that your honesty during these discussions is respected and will not
be discussed with the recipient without your approval.
Q. Should the cause of the recipient’s disease affect my decision to
donate?
A. You are volunteering, with extraordinary generosity, to donate part of your liver in
an attempt to save another person’s life. Before you make this decision, it is important
that you understand how likely it is that your sacrifice will actually have that result.
Some diseases (such as hepatitis C and cancer of the liver) can recur after transplant.
We will be discussing the recipient’s medical condition with you, what outcome we
can expect from the transplant, and what possible additional complications, if any, may
be associated with the recipient’s particular disease. Once we discuss all this
information with you, only you can make the final decision. We expect that you will
understand and respect the confidential nature of these discussions and will be sensitive
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to maintaining the recipient’s privacy in these circumstances. Your recipient will be
aware that we need to have these discussions with you.
Q. Will I require a blood transfusion during my surgery?
A. Blood transfusion during this surgery is very unusual, although it may be necessary.
As a precaution, we will ask you to “donate” one unit of your own blood 1-6 weeks
before the surgery. If you do need a transfusion, we can then use your own blood, so
you will not be exposed to the risks of a transfusion from someone else.
Q. Should I stop smoking before my surgery?
A. All potential donors must stop smoking.
Q. Can I drink alcohol?
A. If you are going to be a liver donor, it is necessary that you stop drinking. If you have
a history of alcohol use, it is very important that you tell our physicians. Alcohol use may
not preclude you from being a donor, but you may need to undergo a liver biopsy to be
sure your liver has not sustained any damage. You should refrain from alcohol intake for
6 months after donation, until your liver is presumed regenerated.
Q. Should I stop taking my medication before the evaluation or the
surgery?
A. You should not stop any prescription medication unless advised to do so by a
physician. You should avoid aspirin or non-steroidal anti-inflammatory agents such as
Advil or Motrin for 7 days before a liver biopsy or surgery. These medications affect the
ability of the blood to clot and put you at higher risk for bleeding complications. For pain
relief, you may take Tylenol if needed. Women who take birth control pills or pills for
hormone replacement therapy will be advised to stop taking them because of the
increased risk of blood clots during recovery from surgery.
Q. How long will I be off work?
A. The minimum amount of time you need to allow yourself to recover is 4-6 weeks.
Because people recover differently, with varying degrees of fatigue and pain, you may
need as long as 8-12 weeks. We prefer that you be in a position —both financially and
from a job security perspective —to be able to take 12 weeks if you need that much
time.
Q. Will I be entitled to disability pay?
A. If your job provides disability coverage, you will most likely be covered. However,
because living donor liver transplantation is still relatively new, it is best that you discuss
this with your Benefits Department before you decide to proceed.
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Q. Will I have a scar after the incision heals?
A. In most cases, the incision heals quickly, leaving a scar that fades over time but will
most likely always be visible. The donor’s incision is closed with a plastic closure so
there are no visible sutures(stitches).
If a wound infection develops, you may be left with a wider scar that will be more
obvious. Occasionally, people develop what is called granulation tissue. This is overgrowing or over-healing of the skin, and it results in a raised, wide scar. This can be
corrected by plastic surgery if it bothers you, but it is unlikely that your recipient’s
insurance would cover cosmetic surgery.
Q. Will I have much pain after the surgery?
A. You will experience significant pain after this surgery. We will give you pain
medication, but you may still be uncomfortable for at least the first week or so. You will
have less pain as each day goes by, but most donors tell us that they still have a
significant amount of discomfort for 2-4 weeks after the surgery. Most pain medication
is broken down by the liver. Because you have a significantly smaller amount of liver
volume right after your surgery, we will monitor you very carefully to make sure we are
not giving you too much medication, because doing so could have serious side effects.
Q. What other side effects of donating is there?
A. Being tired has been reported by all donors. This is a result of the body’s emphasis on
re-growing the lost liver tissue. This fatigue will last for as much as 4 weeks. It is very
important during this time to rest and eat a balanced diet. All donors need to do some
sort of “exercise” despite the fatigue.
Please remember that the lobe that is transplanted is not re-grown but the lobe that is
left behind will enlarge.
Q. May I speak with a person who has already donated?
A. The Living Donor Coordinator will be glad to arrange for a donor to call you to discuss
his/her experience. The timing of this call will be pre-arranged.
Q. Will I need to take any medications after I donate a part of my liver?
A. You will not need any medications except for pain. If you develop a wound infection,
you might need to take antibiotics. Some patients will be prescribed a stool softener to
prevent constipation from the use of the pain medications at the time of discharge.
Q. Is there any special diet to eat?
A. No, we just ask that you eat a well balanced diet.
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Following the surgery, many donors have a very limited appetite. It is important to eat
whatever you feel like; small frequent meals work best for most donors. Avoiding rich
fatty foods early on may help in return of normal GI function.
Q. Will I have a normal life after surgery?
A. We expect that you will return to your normal activities within 3 months after your
surgery, provided you do not experience any complications. We do not expect you to
have any long-term complications, but as this procedure is still relatively new, we
cannot yet give you any statistics on the long-term follow-up of donors who have
undergone this surgery.
Q How soon can I have sex?
A. You will probably want to refrain from sexual intercourse for a couple of weeks until
you have less discomfort and are feeling stronger. This decision will be based for the
most part on how you are feeling.
Q. If I want to start a family, how long should I wait after surgery to get
pregnant?
A. There is no definite answer to this, but we recommend that you do not become
pregnant for at least 6-12 months after surgery.
Q. When can I restart my birth control pills or hormone replacement therapy?
A. We advise you to wait for your next cycle after surgery.
Q. How long before my liver grows to its normal size?
A. The liver begins to regenerate almost immediately, with most of the regeneration
occurring within the first 2 weeks after surgery. The expectation is that by 8 weeks’
time, most of your liver will be back to normal or near-normal size. It continues to grow
small amounts throughout the first year
Q. Would I be able to donate part of my liver again in the future to
someone else?
A. No. Once you donate a portion of your liver, you cannot do it again in the future.
Q. When can I begin to exercise?
A. As soon as you wake up from the anesthesia, you will begin “exercising.” You will
need to take deep breaths and cough to make sure you are getting enough air into all
the areas of your lungs. This will help prevent pneumonia. You will also begin to exercise
the muscles of your legs by flexing and relaxing them periodically. You will be helped out
of bed within 24 hours of your surgery and will begin walking. We cannot stress enough
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how important walking is to your recovery. Each day, you should be pushing yourself a
little bit more. By walking as soon as possible after your surgery, you will help to prevent
such complications as blood clots, pneumonia and muscle wasting. You are encouraged
to continue a program of daily walking when you go home.
Remember: the goal is to be back to normal health and activity within 3-4 months
after surgery.
Q. When can I lift weights, jog, swim, etc.?
A. You will need to avoid any heavy lifting for the first 4 weeks, until your abdomen has
completely healed. You should not lift any weights greater than 10-15 lbs. After 4
weeks, if you are feeling well and are not having any complications, you may begin to
return to your normal activities, such as swimming, jogging, aerobics, cycling etc. Begin
slowly and build up gradually. Be very cautious with abdominal exercises. Swimming
should only be initiated when the wound is healed.
Q. When can I go on vacation or fly?
A. You should not plan any vacations or trips outside the U.S. for at least 4 weeks and
preferably 8-12 weeks after your surgery. If you wish to return to your home state and
you have a good physician, you may be able to do so 2-4 weeks after the surgery,
depending on how you feel and how you are recovering. Remember that if we have any
concerns about possible complications, we will want you to return to Mount Sinai for
evaluation and treatment. It should not be a problem for you to take trips or vacations
after 8-12 weeks.
Q. Once the transplant is scheduled, will it definitely happen?
A. A number of things might happen to delay or cancel the procedure. As examples,
your recipient’s condition might deteriorate to the point where his or her MELD score
becomes too high for living donor transplant (MELD is the scoring system used to
establish the patient’s position on the transplant waiting list, the recipient may become
too sick for a transplant, or, the recipient may develop an infection or some other
condition that would need to be treated before the transplant could be performed.
Finally, the recipient may be transplanted with a liver from a deceased donor, and not
need a living donor.
Though it happens rarely, we may even need to postpone the transplant at very short
notice (sometimes hours before). For instance, if we have a number of deceased donor
transplants that same day, those transplants would take precedence over a living donor
transplant: it is impossible to know when deceased donor organs will become available
and when they do, they must be used within a short time. Also, if your recipient has liver
cancer and we discover during the “exploratory laparotomy” that the cancer has spread,
then we will not proceed with the transplant.
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Q. Do I need to undergo any special preparation before surgery?
A. Once you have completed your evaluation and you decide to proceed, you will need
to donate a unit of your blood within 1-6 weeks before your surgery, This blood will be
stored in case you need a transfusion during surgery. We may also need to repeat some
of your blood tests, if they were preformed more than 30 days before your surgery date.
Do not take any aspirin, Advil or Motrin (non-steroidal) medication within 7 days of your
surgery. There will be a “final review” for you and your recipient and your immediate
family 2 or 3 days before surgery. This will give you an opportunity to ask any remaining
questions you may have.
Q. Will I be admitted the night before surgery?
A. No. You and your recipient will be admitted to the hospital on the morning of the
surgery. You will probably need to be here at 6 a.m. The Living Donor Coordinator will
meet the donor and recipient in the Pre-Surgical Waiting area. (This is on the 2nd floor of
the Guggenheim Building).
Q. What does my family do while I am in the Operating Room?
A. They will wait in the Pre-Surgical Waiting area and the Living Donor coordinator will
update them while the surgery is being preformed.
At the end of the Donor’s surgery, the Living Donor Coordinator will bring them to the
Surgical Intensive Care Unit (ICU). Your family will be allowed to see you as soon as the
ICU nurses have completed their assessment.
Q. How long will I be in the hospital?
A. The average hospital stay for donors is 5-7 days after surgery, including 2 days in the
SICU.
Q. Will I be in the Intensive Care Unit after my surgery?
A. After your surgery, you will be taken to the Intensive Care Unit and in rare
instances to the Recovery Room for close observation by the nursing and
medical staff for about the first 48 hours. The staff of the Surgical Intensive Care
Unit will work with the transplant surgical team to monitor your vital signs and
blood tests.
Once we see that everything is stable and you do not have any bleeding or other
complications, you will be transferred to our transplant floor, on the ninth floor
of the Guggenheim Pavilion (9 Center).
Q. Will I be in the same room as my recipient after the surgery?
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A.
No. You are intentionally separated from your recipient. We want you to focus
on getting better and being comfortable. After you are transferred to the
Transplant Unit, you may go and visit the recipient. This is one way that the
transplant team is certain that both the donor and recipient will get up and
walk.
In the case of parents or grandparents that donate to their child/grandchild, the
Living Donor Coordinator will transport you to the Pediatric ICU to see your
child/grandchild in a wheelchair. This is regarded as important for the donor as
the pain medication, exercise and diet.
Q. How soon will I be able to eat and drink after my surgery?
A. As soon as your intestines start to function again after the surgery, you will
be able to begin to drink and eat again. We will know it is safe for you to begin
taking sips of water when you are passing gas. If you do not have nausea or
vomiting with the sips of water, you will be able to progress to clear fluids, a soft
diet, and then a regular diet within a few days. Occasionally, some individuals do
not return to their usual eating habits this quickly. The less pain medication used
and the sooner you begin walking, the faster the bowels return to normal and
diet resumes.It is important to remember that donors may only eat either
hospital food or food brought from home. No restaurant food is allowed until
after hospital discharge.
Q. Will I have any tubes or drains in me after the surgery?
A. You will have intravenous (IV) lines in you during and after the surgery so we
can give you fluids to keep you hydrated and also give you medicine. One of
these lines may be used to administer your pain medication after the surgery.
You will also have a catheter (drainage tube) in your urinary bladder so we can
monitor how your kidneys are working during and after the surgery. Having the
catheter in your bladder also means that you will not need to get up to go to the
bathroom immediately after your surgery. You may also have one or two small
drainage tubes in your abdomen to drain any blood or bile that might ooze after
the surgery. Tubes and intravenous lines will be removed within 2-4 days.
Despite these tubes, you will still need to get out of bed to facilitate a faster
recovery.
Q. When will my sutures or staples be removed?
A. The donor has a “plastic closure” of their incision. The sutures are all
beneath the skin and will be absorbed. You will be given an appointment to
return to the outpatient office approximately 10 days after your surgery to have
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your incision checked and have any sutures or staples removed. Sometimes,
however, the surgeons do not use sutures or staples to close the incision, using
instead strips of special tape called “steri-strips,” which are allowed to just fall
off.
Q. Must I remain close to the hospital after my surgery?
A. You should remain close to Mount Sinai for at least 2-3 weeks after your
surgery. You also need to be able to return here if you experience any problems
during your recovery. If you are from out of town or out of state, you may stay at
our nearby Transplant Living Center (212-348-3308). We recommend that you
have a relative or friend stay with you, especially immediately after you leave the
hospital.
Q. Will I need a nurse to take care of me when I leave the hospital?
A. Although this is a very big operation and you will be extremely tired and
weak, you most likely will not need any professional nursing care at home. You
will need a friend or family member to do your food shopping, perhaps cook
your meals for you, and be available should you run into any difficulties. It is also
nice to have some company when you first come home from the hospital. You
should have someone available to take you to and from the hospital for your
check-up.
Q. Who can I call if I have any additional questions?
A. Call the Recanati/Miller Transplantation Institute at 212-659-8351 and speak with
the Liver Transplant Coordinator for The Living Donor program. Please Note: Your
recipient MUST have completed an evaluation as a candidate for a liver transplant and
must be ready to be placed on the liver transplant waiting list before a donor evaluation
can begin.
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